Chapter 2 - Meet Charlie
Charlie is a wonderful child, a child who never hurts anyone intentionally. He never lies or conceals anything from us. He is a good egg. When he was little I would call him my egg roll from the phrase, “with five you get an egg roll”. Egg rolls are my favorite part of the meal. That’s Charlie ~ the best part of the meal. Figuratively speaking, of course.
He is tall for his age group, blond and handsome with big blue eyes and a captivating expression. He does have a larger than average head, but it is not that noticeable, I am reminded of it only when the doctor does a well-child check up and mentions it.
Most of the time his face is smiling and happy. He becomes so overwhelmed with joy at times that he has to run around and laugh and let it out. But usually we don't know what he is laughing at. He is an extremely intelligent child who was reading small words at three years of age, although he was still silent. Charlie is six and has autism.
Charlie was the perfect baby. He is our fifth child, by this time I knew an easy baby when I saw one! Especially after his brother Jon's babyhood, which was very intense with colic that lasted for a year. At the time of his birth our kids were 18, 16, 15, and 18 months old. All except the oldest were boys. All had normal development and were somewhat early readers.
Charlie was stubborn in coming into the world, and was nearly 2 weeks past his due date when the doctor ordered a stress test that indicated that Charlie needed to be delivered quickly, but we were sent home with the instructions to come back for an induction in the morning. He was delivered after about 7 hours of labor. I had an epidural so I was feeling no pain. This was my first epidural in 5 kids and it was strange to be told that I was contracting and not feel it.
When Charlie was born I saw in the mirror that his body was two colors. His body was waxy white and his head was purplish. The umbilical cord was wrapped twice around his neck. I said to the doctor, “The cord is around his neck!!” and he replied, “I knew that it was around his neck throughout the labor.” He lifted it off and passed the baby to the nurse who blew oxygen past his face to pink him up. I do feel, to this day, that he knew that Charlie was in danger and did not do a C-section. I feel that Charlie suffered an injury that resulted in autism due to his deprivation of oxygen through 7 hours of induced labor. Another contributing factor was that I had been told by the OBGYN that continuing to take ibuprophen for a long standing herniated disk was ok. Ibuprophen, I later found out, is an anti-prostiglandin. It keeps labor from starting.
The doctor who delivered Charlie no longer practices and in fact, so many lawsuits were decided against him that the entire hospital went out of business. We didn't sue, "No one can pinpoint what causes autism", the lawyer told us after evaluating Charlie's records, "Could you prove that he has cerebral palsy? That would be something." We left it at that. The remark about cerebral palsy was just terrible.
Charlie did "pink up" within about 10 minutes of oxygen and latched on well t the breast. He had a perfectly round head and a little pointed chin. His eyes were so open; he seemed to see everything at once. He did not cry very much. As time went on we realized that Charlie was indeed a great nurser, breastfeeding for 3 years. This was mostly due to dietary problems. It was much longer than I ever thought I would want a child to nurse, but over the last 2 years was just mainly at night. It helped him sleep. Early on we determined that he was extremely sensitive to milk, even in my diet, so we steered clear of dairy products right from the start. This was not a new situation to me, because my other kids were sensitive to milk, as well.
Charlie was a very quiet baby. He didn’t sleep for long spells at any given time, but was just so good that it didn’t really matter. He could play by himself for such a long time that I thought he had an exceptionally long attention span. Charlie had severe separation anxiety that lasted until he was 3 years old. I could not leave him without him becoming hysterical. I could not even walk upstairs without him.
At 12 months old we started worrying because he was not talking or babbling. At first my husband thought he was deaf because he didn’t seem to have a startle reflex. He came up behind Charlie while he was watching T.V. and clapped his hands very loudly behind his head. Charlie didn’t react at all. I took it a step further and one day while he was napping on the couch I got out pans and banged them together above his head. Nothing. I recorded the pan banging session, but my husband didn't want to watch it. He knew how bad it was. We had his hearing tested and it was A-OK.
Charlie did not make any sounds at all, except crying. No cooing, no ga ga, goo goo. He would just sit quietly by himself turning a toy over and over or just looking at something. He had no words for Mama or Dada. He didn’t ask for anything. He did not point with his finger. He did not play peek-a-boo or patty cake. He would not name dogs or cats; he would not look out his car window if we tried to call his attention to something outside, like a cow. He did not even seem to know that we had two dogs.
I felt that Charlie was not developing as he should because I was not stimulating him enough, or maybe it was too much TV. I wasn't reading to him enough. I wasn't getting through to him. I felt the weight of his silence on my own shoulders, sure that I was doing something wrong with him. During moments when we were both quiet at home I felt that I was causing this lack of communication because I was being too quiet.
I thought he had good eye contact, and I think that he did, with me, but with others he would look through them or look away from them. To this day he avoids eye contact, even with me. The exception to this is when has just been exposed to a really big stimulation like a bath or time on the swings. Then he will make good eye contact for a little while. Sometimes he will stare into our eyes, but we have found that he is watching his own reflection in our eyes.
At about 12 months Charlie became obsessed with doors. Any door. You name it - even the doors on the soda coolers at the grocery stores. I can’t count how many times store clerks have unbraided me for letting him open and close the doors, or tell me how he would be injured by the doors, but the cost of stopping his door obsession was to endure a half hour of screaming. And this child can scream. Ear piercing shrieks. It goes on and on. He can scream for over 40 minutes without coming up for air. I know this because the ride from the nearest grocery store is 40 minutes away and he has screamed every single moment of that ride home when something has set him off.
It seemed to sooth him to open and close doors. He especially likes automatic doors. Once he became tall enough to trigger the electronic eye he was captivated by moving into range, triggering the door, then stepping to the side to watch the door slide back into it’s place. Again and again he would repeat this. We are talking hours here – if he was allowed to continue without us stopping him. And each time we would stop him he would fight us with screaming. We have since learned the power of distraction. At one point we learned that when we tapped him on the shoulder and called “Goose” he would leave the doors and play Duck, Duck, Goose with us. Thanks Heavens for Duck, Duck, Goose.
Clothing was another issue for Charlie. Charlie went through a year, I like to call it his naked year, when he would not keep clothes on. It was actually closer to two years. It was terrible trying to keep him dressed. He would run outside naked all the time in the summer and was so quiet about it that we would not notice until we would see him streaking by the windows. Neighbors would call to tell us that Charlie was streaking again. He was between two and three years old at that point.
Until he was six, he would not get into a kiddie pool or splash in a puddle without wanting to take off all of his clothes. Now that he is getting bigger, he has learned to wear a special swim suit which is snug and goes over him from shoulders to crotch. It has inset panels of foam for flotation, but it seems to fill a sensory need in him. This summer he wore that suit pretty much full time. Getting it off of him was a nightmare.
What is cute for a two year old is embarrassing for a five year old. Many times after he uses the toilet he forgets to put his pants back on. He seems to not know that it is not appropriate to not wear them when he is outside or just playing in the house.
Charlie is the latest Houdini. When we moved here we were thrilled to have a large yard, but it is on a rural highway. We moved in July and it took until the following April to have a chain link fence installed. The first summer was very hard having to be on patrol constantly to avoid Charlie just walking away. So, we now have a fenced-in yard with childproof self-locking gates. He figured them out pretty quickly. Adults come to our house and we have to show them repeatedly how to operate them, but no one had to explain it to Charlie. We have padlocks on the gates as well now. We have deadbolts on all of the outside doors. We NEVER leave car keys where he can find them. Once I found my keys dangling from the ignition. That was the end of leaving keys on a high shelf. They must be out of sight and inaccessible. We have a garage with a garage door opener installed on the wall. That opener is hidden in a wooden box with a lock on it. We live under lock and key. Still, Charlie has been brought home three times by neighbors who have found him when we were not aware he had gotten out. Each time we have had to do more to tighten security as he has become more ingenious in his attempts to get out. I am not sure what we will do when he learns to climb the fence.
He can climb higher than a monkey and runs faster than greased-lightning. He loves to play outside; his Dad built a HUGE swing set. It is all wooden and just immense. But it only has swings and a slide. That is all he needs and wants. We would like to add a tire swing, but can’t afford it right now, it would mean building on to the swing set.
In the winter, which is really long and cold here in PA, he is stuck inside and our home becomes the playground. March, 2004, he tried to ride his big wheel down the stairs. OUCH! He still has no fear of danger and that causes a lot of bumps and bruises. We have to check him every night in the bath for injuries. He has so little sensitivity to pain that we have found injuries that another kid would have come crying to us about, but Charlie just ignores it. We have heated the attached garage and in the winter we have riding toys out there for the kids to burn off energy. The cars sit outside in the snow. But you can't box in that energy. We do allow bikes in the house itself, but only small bikes. Charlie likes to ride his cozy coupe and that is just too big to have inside.
Charlie can operate any TV, VCR, DVD player or video game that is in existence. But he can’t understand a computer mouse. He loves books, but can’t stand to listen to stories, except for Goodnight Moon and Brown Bear, Brown Bear, What do you See? He loves to count bananas and apples, but won’t eat them. It is a mystery why he is the way he is.
Charlie does not have a good idea of who the people in his family are. He has just recently become able to call me Mom and his father, Dad, but it is not said in the same manner as other kids would say it. It is a learned response and is said in exactly the same tone as it was taught to him. When he truly needs someone due to an injury or other deep need, he has no word for it. He just moans. He knows some of his other sibling’s names, but not all of them. He does not know his aunts, uncles or grandparents. When they visit he does not seem to recognize them from previous visits.
He does know his teachers. He knows his bus driver. He sure knows Spiderman. It is a mystery to me why he has no innate knowledge that I am mommy. I thought that was a fundamental thing that all kids know. I was wrong. Life with Charlie reminds me of the country song that goes, “I Love This Crazy, Tragic, Sometimes Almost Magic, Awful, Beautiful Life”